Off to Boston we go.

It is official Madison will be headed to Boston for her surgery and my husband and I will follow. Supposedly we can stay at the hospital which is good that way we can be with her. She looked to beautiful when we saw her yesterday. We saw so much of her eyes this time and for quite the while.I took one of the best pictures "with my phone" unfortunately...which I could have used my Canon without blinding her with the flash BUT those days will come. My husband changed her diaper this time...was funny to watch. He fed her a bit of colostrum and I fed her the other half...it was weird when I was feeding her, her eyes were open this time and she was looking at me...I never had that before. When the nurse was doing things and getting her situated she was crying :( but without sound because the tube is between her vocal cords...still sad to see. I saw her belly and to my husband and I it looks terrible...to the nurses its a tad bit better? I don't know I just hope the color gets back to normal and it comes down to a more normal size...she has no belly button because of how much it sticks out. But she is more stable now it seems to the meds for the infections seem to be working. There hasn't been a positive blood culture since the 12th. She can tolerate handling better. Her respitory settings are lower than before. Now they seem to be in the 20s and 30s. We are hoping after this surgery she will start to eat and handle it well.